Chronic Fatigue Syndrome (CFS) is one of many mystery diseases not in the public eye because it is incorrectly named; has no prominent victim; has been cruelly ridiculed and is only diagnosed when its symptoms do not match any other diseases. Most humans after a vigorous work day go to bed fatigued. Fatigue is no big deal. CFS is, however, a very big deal. It is not caused by an inappropriate life style; it strikes with no apparent cause; it often comes on without warning and brings on a whole array of associated pains and disabilities. It is a democratic disease disabling general populations with 1 million in America and 27 million world wide. It brings often long time sufferings for its victims and their loved ones. It causes unemployment, destroys careers and marriages and is very costly to society.

What can be done? Unfortunately we are still in a deep recession. Today’s anti-government debt reduction atmosphere works strongly against this Advisory Group’s effort to focus federal attention on a diagnosis and cure for CFS. In reality CFS is in a fiercely competitive funding battle against more widely understood diseases like cancer.

The history of our fight against polio gives us hope. My generation saw photos of polio victims confined to artificial respirators we called “iron lungs”. We knew that President Franklin Delano Roosevelt was crippled by polio in 1921 AT AGE 39. In 1938 he established the National Foundation for Infantile Paralysis both to find a cure and also to care for the victims. American compassion and generosity lead to the “March of Dimes” and ultimately to Jonas Salk and the miracle vaccine. Keep in mind that this was the depth of the really Great Depression. A dime or ten cents was an hours pay for many workers and would buy two bottles of coke or a children’s Saturday afternoon at the movies.

A similar effort of a prominent person leading a noble cause to fight Parkinson's disease is now underway led by its most prominent victim the actor Michael J. Fox.

There is another cause for hope. We may find a skillful and deeply determined man or woman who will dedicate a life to finding a diagnosis and cure for this scourge. A shining example was my friend of fifty years Dr. Baruch Blumberg .He died last April 5. He was a Nobel prize-winning biochemist and medical anthropologist who discovered the hepatitis B virus that causes liver cancer. He then helped to develop a powerful vaccine saving millions of lives. Early each spring he would circulate an annual letter reporting on his research in every nook and cranny of the globe. CFS needs a champion with his great skill as a doctor, his unbounded curiosity and his determination.

It is my personal hope and belief that once the American public understands the seriousness of this disease we will mobilize our vast medical resources and our genius for organization and find the cause and cure.

Prepared for CFS Advisory Committee Testimony-May 11, 2010
Rev. Bernard F. Hillenbrand retired

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